by Joan Lunden
If that continued, would it eventually make it hard for me to swallow?
That thought really scared me.
Joy, my oncology nurse, suggested that I try raw honey to help relieve the discomfort of the mouth sores, but she said it had to come from your locale. One of the nurses brought me a jar from a local health food market. When I used it for the first time, it definitely helped. Even so, the mouth sores became an ongoing battle that would continue and worsen throughout the AC round of chemo.
As I began my third AC chemo infusion, I realized I was officially halfway through my second round. I secretly pleaded with God not to let the second half of this round become much more challenging than it had been already. I knew it might be an unrealistic request, especially since chemo is cumulative, but I didn’t think there was any harm in asking. The good news was that my white blood cell count was up to 8.0, which was terrific! With my blood count remaining consistently high, my treatment was working.
I told Dr. Hollister about the sores in my mouth. He said there was something they could do to help: Just before the nurses administered the “Adriamycin push,” they would give me a cup of ice chips. If I sucked on the ice chips before the push, during the push, and five minutes or so after, the ice would constrict the blood vessels in my mouth. As the chemo rushed into my body, it wouldn’t be able to go to the cells in the lining of my mouth because those vessels were closed. That simple act would prevent or at least help with the troublesome mouth sores.
Wow!
Who knew?
For some reason, I felt compelled to share with Dr. Hollister how lucky I considered myself because I was reading so many messages from women all over the country whose side effects were much worse than mine, making my physical journey look like a walk in the park. I also told him that I had recently done an appearance on Access Hollywood, where I received a couple of messages that stopped me in my tracks. While it was such a wonderful experience to hear from so many people, it was also tough, because sometimes they unintentionally put ideas into my head that I didn’t have prior to reading their letters.
One of them said:
It sounds like you are almost done with your chemo which will mean that you will be declared cancer-free, cured, etc., soon. You will be a breast cancer survivor. While it is a joyful time for so many, it can be a time of anxiety for some as they contemplate the possibility of recurrence. Have you thought about having your cancer return, given especially that TNBC can cause a higher rate of recurrence? Do you have any insight on dealing with this fear? You have shown many how to cope with the challenges of breast cancer and maintain a positive attitude throughout. Any thoughts on recurrence fears after treatment has ended or when nearing the end of treatment?
Another said:
My friend was only cancer free for 5 months and had a recurrence, same breast . . . also triple negative. Had chemo, lumpectomy, and radiation. How do you get past the fear? I could only say it’s in God’s hands. Thank you in advance for your response!
Not only did these leave me asking, “What the heck do I say to them?”
But they also left me asking myself, “How do I deal with that fear?”
While the thought of “What if it comes back?” had crossed my mind, I hadn’t given it a lot of weight—until that moment.
Dr. Hollister had a wonderful sense of humor and an incredibly infectious wit. Naturally, he also knew the right response. He looked at me and said, “I would turn to the great philosophical guru Wile E. Coyote—you know, the cartoon character who always ran off the cliff at top speed? Well, he was never in trouble until he looked down.
“Just don’t look down.
“Keep your head up and expect the best.
“Don’t go to the negative places.
“This AC you’re going through and the radiation that will follow is like taking the morning-after pill. You take it and you don’t get pregnant, but you also never know if you actually were pregnant or weren’t pregnant, and you never will.
“This is exactly the same.
“You will never know whether you still had cancer cells in you or if you didn’t, but at least you took that morning-after pill.
Another woman asked about new medications—and to that he said, “Let me just say that the oncology world is like a big ship with a tiny rudder. It takes a long time for it to change its direction. First it needs strong evidence that it should change; then it needs everyone in the profession to agree; and then some of the groups are still going to stick by ‘how we always did it.’”
Goodness, he summed it up perfectly!
I was so relieved to hear his thoughts. And though I wouldn’t have looked at Wile E. Coyote as a philosopher, Dr. Hollister had made a great point: Perception becomes reality. It really is how we see things that matters.
While I was getting my chemo that day, Lynn, the nurse navigator, came in to see if I had any questions about the next steps. I thought this might be a good time to ask about radiation; I assumed I should expect somewhere around four weeks in January. She said it might be four weeks or maybe six.
What?
Possibly six weeks?
That was news to me.
I had obligations and commitments already booked. I didn’t have time for six weeks of radiation!
Lynn suggested I make an appointment with Dr. Ashwatha Narayana, the clinical director of radiation oncology and the radiologist who would be doing my treatments, so that he could look at my charts and make the decision sooner than later. She also said to make two immediate follow-up appointments, for a “simulation” and a “run-through,” so that I would be ready to go right after the first of the year.
This was really good information and advice.
I went home and called the radiologist and got the first appointment they had. No one has ever accused me of standing still! Besides, you can’t hit a moving target.
I was about to leave for my first radiation consultation with Dr. Narayana when Dr. Z called to suggest I speak to the doctor about scatter effects of radiation, which can lead to scarring of the lungs, blood vessel damage, atherosclerosis, and tissue burns. He wanted me to ask the radiologist what the transient and permanent side effects would be. As a cancer survivor, Dr. Z always wanted to make sure I was going into each part of my journey with another perspective and information in my arsenal when meeting my new doctors.
The first thing Dr. Narayana wanted to go over was all of the different choices of treatment I had.
Wait a minute.
More choices?
That meant more decisions!
Honestly, I just wanted him to point the damn radiation machine at my boob, blast me, and kill the cancer.
Apparently, it’s not that simple.
Dr. Narayana explained how cells could grow out of control. He said my cancer cells had taken years to become the tumor that was discovered in June. There was the concern that other cells around the area might not have been part of that tumor and weren’t considered cancer cells yet but were well on their way.
While chemo is used to kill the cancer cells, you also need to get rid of those cells that are on their way to becoming cancer cells, and that’s where radiation comes in.
Dr. Narayana suggested that I weigh the good effects of radiation against the bad. Since my tumor was at the back of my breast, by my chest wall, I followed Dr. Z’s lead and asked about the scatter effects of the radiation on my ribs, lungs, heart, and blood vessels.
Dr. Narayana explained that there had been a lot of changes in the way radiation was administered, so women didn’t have as much damage to other organs in their body or as many long-term side effects. In the past, clinics had all women lie on their back with an arm up over their head during treatment; many clinics still do the treatment that way. However, research has shown that lying on your stomach on a special bed, with your arms over your head and an opening for your breast to hang down, allows the radiation to be directed so that it does not cross a p
ath that would impact the ribs, lungs, or heart. Hearing this made the decision easy—I’d definitely lie facedown.
Dr. Narayana explained that they could direct the radiation specifically at the quadrant of the affected breast where the tumor was, or they could treat the entire breast. He felt that it was best to treat the entire breast and go after all the cells that might be in early stages of becoming cancerous. Okay—got it. I would go for the whole breast and get rid of all potential killer cells.
Next, the doctor said that the most reliable evidence showed it was best to go through six weeks of treatment. He already knew I was a bit taken aback by the prospect of having to go that long; there were some treatment centers doing a three-and-a-half-week treatment regimen. However, in order to do that, they gave higher doses of radiation, and that in and of itself could be tumor-producing. In his opinion, the best choice for me was a lower dose of radiation over a course of six weeks. This protocol would give me the best chance for a positive outcome and no recurrence. Since I had triple negative breast cancer, with a higher incidence of recurrence, this point was especially important for me to consider. I had to choose the six-week program if I wanted to give myself the best possibility of no more cancer.
So there really were no choices that day—just explanations of why I would go through this treatment facedown for six weeks.
I liked his approach.
I was in.
A couple of days before Thanksgiving, I went back to Dr. Narayana’s office to get set up for my radiation treatments in January. They had me lie facedown on a special table that allowed my right breast to hang down in a hole so that it (and only it) could receive all of the radiation. They took measurements and photos of exactly how I was lying on the table and created a mold inside the pillow my head and arms were on, so that each time I went in for treatment, that mold would force me to lie the same way. The radiation machine wouldn’t work unless all the measurements aligned perfectly, so this was an important part of the process. They also gave me three tattoos (just really tiny dots). The first was on the outside of my right breast; the second was on the inside of my right breast; and the third was on my back. Whenever I came back in, they would match up the lasers to the tattoos. That would keep the treatments consistent. I was mentally prepared for the tattooing to hurt, but it didn’t. The dots were small and didn’t go deep under the surface of the skin, so they were no big deal.
Does having three tattoos officially make me a badass?
Thanksgiving is always a day of reflection, but that year I couldn’t help feeling I had something big to be thankful for: my life. As long as the cancer was really gone at the end of this treatment plan, I had a lot of gratitude to show and share.
I had no idea whether I was truly cancer-free. All I could do was hope, pray, and wait to see if anything came back.
While I knew this was a day to be thankful, I couldn’t stop thinking about the woman who asked how I was dealing with the fear of my cancer returning after being deemed cancer-free, or the one who shared the term “NED and a survivor.” Both really affected me. For the past week I’d been inexplicably teary, which wasn’t normal for me. I couldn’t explain what was triggering my reaction, but I would describe it as feeling raw and emotionally fragile all the time. Feeling like this was awkward, strange, and new.
CHAPTER 28
The Connection That Changed Me
There is no exercise better for your heart
than reaching down and helping to lift people up.
My father
DR. ERLE BLUNDEN
Cancer surgeon
One of the most remarkable discoveries I’ve made on this journey has been the connection with thousands of people who have sent me their well wishes, prayers, advice, and stories of their own journeys. As in the quote that opens this chapter, I wanted to write about my experiences so that all the people who have reached out to me and given of their hearts understand that their small acts of kindness made a very big impact on me.
Although I didn’t realize it, I had lost sight of how fortunate I was to hold such an amazing position on network TV and how that job connected me to so many people around the country in a unique and special way. I have come to understand it more fully over the past year as I have reconnected with so many of my “morning friends,” and I have profoundly felt their love. I have also found immense strength and support in their messages. I suppose it sometimes takes a challenge to fully appreciate something intangible, like the intensity and breadth of a link to so many strangers far and wide.
If it weren’t for social media, I never would have known people’s capacity for compassion and kindness. I never would have been connected to so many Americans, heard all their amazing stories, their wonderful well wishes, or their helpful advice in my own time of need. I certainly never would have understood how much I mattered to so many—that they still cared so deeply, and with such kindheartedness.
On my last day of chemo, I woke up with what appeared to be another bad cold. I wasn’t sure whether it was an actual cold, a sinus infection, or a side effect from the chemo treatments. The inside of my nose was terribly inflamed. I was coughing, sniffling, and my eyes were red and dry. I didn’t want anyone to see me, let alone get out of bed.
But it was an important day—a significant day in my journey.
I was worn out, physically and emotionally, and I hadn’t even stepped out of my bedroom door.
Jeff encouraged me to get up, but I wanted to wait until the kids left for school. I didn’t want them to see me looking so worn down. I didn’t want them worrying about me. I wanted them leaving that morning with their biggest concern being whether recess was indoors or outdoors.
For many, the last day of chemo is a day of celebration, something anticipated and embraced as a finale.
You know what?
I’ve never loved the way I feel at the end of a big party.
In fact, I always get post-party blues.
I’d been feeling emotionally charged that morning and in the days leading up to this last treatment—and not in a good way.
Throughout my entire journey, I had held on tightly to this warrior mode. But in doing so, I hadn’t allowed myself to face a lot of my fears.
The ones I tucked down deep inside of me.
The ones I didn’t want to face or talk about—with anyone.
The ones I didn’t want to acknowledge or deal with or give one breath of life to—ever.
About a week before my last treatment, an oncology nurse took me aside and said, “Everyone reacts differently to the last day of chemo. Don’t be surprised if you aren’t totally elated. It’s a mixed bag of emotions.”
Thank goodness she gave me this heads-up, because I was emotionally all over the board. A part of me wanted to chalk up my mood swings to the medication and treatments, but another part of me knew that I’d spent the past seven months talking about little other than my disease, and now they were cutting me loose.
What did that mean?
The nurse told me that a lot of people got teary on their last day of chemo, while others were joyous and celebratory.
There was no right or wrong response.
That got me wondering: When is an ending not an ending . . . and would this journey ever really end?
The more I thought about it, the more I recognized that I was coming to the end of doing something about the deadly cancer cells in my body, but I wasn’t done. Though I was coming to the end of chemo, I still had radiation to go through.
I think they call this winning the battle but still fighting the war.
So . . .
What was I supposed to do?
Sit back and wait to see if the cancer cells resurfaced?
The thought of being anything less than proactive was awful.
It made me terribly uncomfortable because I’ve always been one step ahead of everything. Except this, and even this I’ve tried to outrun.
This is the time when peopl
e start viewing you as a “survivor.”
Was I?
Had I merely survived?
I wanted to do so much more with this new role I’d taken on. I wanted to continue my mission to spread awareness and make an impact. I wanted to keep changing women’s lives. Every time I got an email thanking me for going public, for making women aware of dense breasts and ultrasounds, I had the potential to help save lives.
I wanted that to continue and become a part of my legacy.
And yet I was unbelievably and inexplicably overwhelmed with anxiety on the morning of my last chemo. And though I may have felt that way all summer long, I never—okay, rarely—showed it.
Whenever Dr. Weisberg asked how I was doing, no matter how bad I really felt, my answer was always “I’m doing great!”
She’d look at my blood work and then at me and say, “Oh, really?”
Somehow I overrode all of that.
But I knew I wouldn’t get away with that on my last day.
And you know what?
I didn’t really want to.
It was time to take down the wall.
Let the red cape fall.
Remove my mask.
Nobody can hold it in forever.
You can’t be strong all the time.
Not even G.I. Joan.
When I walked in for my last treatment, the nurse in the room looked at me and said, “How are you today?”
I immediately burst into tears.
What with my system being completely worn down and feeling the need to be stoic throughout, holding in my emotions and doing my best to save face for everyone else’s sake, my emotional release was inevitable.
I knew the outburst wasn’t uncommon, but it didn’t make me feel any better. That nurse found Joy, my oncology nurse, who was as demonstrative as I was that day.
“Damn you! I just dried my tears and blew my nose! I need to get a grip before Dr. Hollister gets here!” I said. I wanted to appear strong—pulled together.